MPN-u unclassified

[Lizzy19]

Hi I’ve only just been diagnosed with MPN-u unclassified so still trying to get my head around things .Am I right I’m thinking it’s a slow growth blood cancer ? I have no mutations but slightly raised platelets ( for 21years & I’m 51) but slight scarring on bone marrow which is a little fibrous .Really worried because it can not always turn into myelofibrosis .I don’t fully understand it all I just know it’s quite rare & ive just got to see what happens so they are keeping close eye on me .Anyone advise would be appreciated .😊

[Nickthedevil]

Hi Lizzy19 welcome to the forum. You will find lots of help here from people who have been living with MPN’s for many years. Yes, MPN’s are classed as rare low grade blood cancers. I have ET Jak2+, diagnosed in 2012 and take aspirin and hydroxycarbamide. The best source of information is the MPN Voice website and Maz, our administrator will send you information leaflets if you message her. Good luck on your journey. Feel free to ask any questions.

Karen

[Lizzy19 in reply to Nickthedevil]

Thank you it’s good to talk to others who are going through same thing x

[hunter5582]

I have had a MPN for over 30 years. Was ET, but progressed into PV about 7 years ago. Still alive and kicking at age 65. Many of us are able to manage a MPN for a very long time. I have never had a single incident of thrombosis in all this time. I have found that the JAK2 mutation causes more trouble for me due to the inflammation it causes. You indicate that you have low level thombocytosis. It is your actual symptom profile that matter the most. It is important to review your overall profile and create a treatment plan with input from a MPN-Specialist. Most hematologists do not have the KSAs to provide optimal, individualized care for MPNs, so expert input is very important. Here is a list of docs just in case you have not already had a chance to consult mpnforum.com/list-hem./ .

The good news is that you will have plenty of time to sort this all out. We all cope differently and have to find what works for us. I find that knowledge is power and try to understand the MPN I have better so that I can make better decisions regarding my care. With your having a triple-negative MPN, you fall into a rare part of a rare disorder; however, there is information you can access. Here is just one exapmple.

ncbi.nlm.nih.gov/pmc/articl...

All the best to you.

[Lizzy19 in reply to hunter5582]

Thank you so much for the reply ,I’ve just been reading the links so been helpful 😊x

[Mazcd Partner MPNVoice]

HI Lizzy19, welcome to our forum. It is a lot to understand when you are diagnosed with a MPN, and not so easy for you as your MPN is unclassified, I would advise that you read the information on our website mpnvoice.org.uk, it will help you to understand more about MPNs in general. There are a lot of people who are unclassified and are on a 'watch and wait' and it would appear that this is what your medical team are doing with you, monitoring you regularly. Feel free to ask questions, we will do our very best to answer them for you. Best wishes, Maz